Our Voices: A Blog by Links, Callers and Volunteers

Wednesday, September 22, 2010

I recently attended the annual conference for FORCE (Facing Our Risk of Cancer Empowered), the national organization for hereditary breast and ovarian cancer. I was so happy to see Sharsheret’s exhibit booth there, because I realize what an important issue genetic cancer is for the Jewish community - and how so few women and men know that they are at risk. Sharsheret was a great help to me when I first needed to understand what it meant for me, as a Jewish woman, to be BRCA positive. I found information I urgently needed from Sharsheret's resources and website.

This is the information I wish I had known earlier in my own life: 1 in 40 Ashkenazi Jews carries a BRCA mutation that leads to extraordinarily high rates of genetic cancer in women. Women who carry a mutation have up to an 87% lifetime risk of breast cancer, and a 27% - 44% risk of ovarian cancer, depending on which kind of mutation they carry. BRCA mutations can lead to increased risk of cancers affecting men as well, such as prostate or pancreatic cancers, male breast cancer, and melanoma.

If women know about their risk ahead of time, they can choose from a wide range of options to help them find their cancer early or even to prevent it altogether. While recent research estimates that one million people in the U.S. carry high-risk BRCA mutations, only 5% of them know. I was one of those 95% who didn’t know, and I learned the hard way about the difference between knowing and not knowing.

I remember seeing articles about the BRCA gene in women’s magazines, but I always skipped right over them. My grandmothers had each lived long, healthy lives well into their eighties, and I never knew to look to my grandfathers’ sides of the family. I also never knew that the ovarian and pancreatic cancer in my family could be BRCA-related. Breast cancer seemed so separate — I never thought about it as genetically interlinked with other cancers. My doctors didn’t seem to know either. I have the classic family history that indicates testing is important: I am Ashkenazi Jewish, my mom died of ovarian cancer, and her father died of pancreatic cancer. Yet, not a single doctor ever suggested I check my DNA.

I ran into information on genetics by chance, as part of a research project on the future of healthcare. I was looking over a website for my project, when I noticed that it offered genetic testing that could help Ashkenazi Jews check for their risk of ovarian cancer. After talking with their genetic counselor, I signed up for a test.

I was shocked to discover I tested positive for one of the three BRCA mutations so common for Ashkenazi Jews. Once I learned I was at high risk, I had more extensive screening for cancer that I never would have had otherwise. After a completely normal mammogram, my MRI showed I already had breast cancer. I never would have had this MRI if my genes hadn’t provided advance warning about my risk. Learning my DNA potentially saved my life.

Hi Lisa,The most important aspect in determining the need for genetic testing is the family history. A personal or family history of breast and/or ovarian cancers (and to some extent pancreatic cancer and melanoma) are indications for testing. Without any cancer history, a negative result is not definitive and, in some cases, may be ambiguous and cause more problems than it solves. This is because, although we know many mutations in the 2 BRCA genes, there are probably more that technology cannot yet identify, and perhaps there are other genes as well. If you have specific questions regarding your family/personal history, I'll be happy to speak with you. Please feel free to call me at (866) 474-2774. But the bottom line is that genetic testing is not yet ready for general population screening: it is only offered to women at risk based on their history.Niecee Schonberger, MS, CGCGenetic for Life Coordinator

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